May is Neurofibromatosis Awareness Month for 1 in 3,000 People Worldwide

NEW YORK – MAY 4, 2018 – Neurofibromatosis, or NF, is a genetic disorder that few have heard of, yet it affects over 125,000 Americans and over 2.5 million people worldwide. The Children’s Tumor Foundation is working to change that through a month-long campaign drawing attention to the inspirational and remarkable stories of those living with NF, and the critical need for research to better their lives. The ‘May is NF Awareness Month’ campaign takes place across multiple platforms and includes a heavy social media presence centered on those fighting NF and those who support them in their fight.

NF causes tumors to grow on nerves throughout the body. As part of the campaign, the Foundation’s I Know a Fighter initiative is a reflection of the bravery that NF patients exhibit in their daily lives. The NF story can be one full of hurdles – diagnosis, symptoms, doctor appointments, MRI scans, pain, surgeries and/or chemo. But the NF story is also one of perseverance, strength and inspiration, which are reflected in the “fighter” spirit.

One of those NF fighters is Samantha Voorhees, a business development manager and mom from Woodland Park, NJ. “I have good days and bad days but I will never let my NF interfere with my daily life or my life goals. At times I may struggle but that doesn’t mean I want to be treated any less than the strong woman and mother that I am.”

Samantha’s story and those of nine others living with NF have been captured by award-winning photojournalist and NF Dad Craig Warga in a series of photographs called This is NF. The collection is available online at ctf.org/thisisnf.

In addition to reading and sharing these stories, there are many ways to get involved in NF Awareness Month:

– Shine a Light on NF Over 160 buildings, bridges, landmarks and monuments (including Niagara Falls, the Cobo Center in Detroit, Swarovski Crystal World in Wattens, Austria and the National Theatre in London) around the world will light up blue and green, the official colors of the NF movement.
– CTF’s campaign to literally shine a light on NF through building lightings has attracted interest and partners worldwide, including the U.K.-based Neuro Foundation, NF Kinder (Austria), the Tumour Foundation of British Columbia, Neurofibromatosis Society of Ontario, the ANFQ L’Association de la neurofibromatose du Québec, LINFA Onlus (Italy) and ANF onlus Italy, among others.
– Visit ctf.org/nfawareness for a complete list of participating locations, and tools you can use to light up landmarks in your community.
– Cities and states around the country are proclaiming May as NF Awareness Month, or May 17 as World NF Awareness Day.
– Visit ctf.org/nfawareness for a complete list of participating cities and states.
– Enter the 2018 Children’s Tumor Foundation NF Awareness Month photo contest and tell us about your NF fighter! Submit a photograph for the I Know a Fighter Photo Contest to media (at) ctf.org with any item that shows the CTF, I Know a Fighter or End NF logo.
– Purchase official merchandise with “I Know a Fighter,” “Born a Fighter,” and End NF imagery, and support the efforts of the Children’s Tumor Foundation.
– Visit the Children’s Tumor Foundation events calendar (ctf.org/calendar) for a complete schedule of NF Walks, NF Endurance events, I Know a Fighter 5Ks, and local community fundraisers taking place all across the country to raise money to fund NF research and recognize the positive spirit and resolve of local NF Heroes and their families.
– Follow the Children’s Tumor Foundation (@childrenstumor) on Facebook, Twitter, Instagram and Youtube for more stories about how the community is working to End NF.

“NF Awareness Month is a unique time that exemplifies the determination and resolve of the NF community,” said Annette Bakker, PhD, Children’s Tumor Foundation President and Chief Scientific Officer. “Because NF manifests itself in a number of ways, we need many ways to fight it, and that includes fundraising and awareness campaigns like Shine a Light on NF, I Know a Fighter, #EndNF, and This is NF, that make it even easier to connect, understand and educate about neurofibromatosis.”

The Children’s Tumor Foundation is committed to finding effective treatments for the millions of people worldwide living with neurofibromatosis. In addition to benefitting those who live with NF, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community. To learn more, visit http://www.ctf.org.